Literature DB >> 27259977

Patient-Reported Outcomes in Glomerular Disease.

David T Selewski1, Aliza Thompson2, Sarrit Kovacs3, Elektra J Papadopoulos3, Noelle E Carlozzi4, Howard Trachtman5, Jonathan P Troost1, Peter A Merkel6, Debbie S Gipson7.   

Abstract

Incorporation of the patient perspective into research and clinical practice will enrich our understanding of the status and management of patients with glomerular disease and may result in therapies that better address patient needs. In recent years, the importance of the patient experience of glomerular disease has become clear, and significant efforts have been undertaken to systematically capture and describe the patient's disease experience. Patient-reported outcome instruments provide a means to assess the patient's experience in a quantitative manner, thus enabling for comparisons within and between patients. Patient-reported outcome assessments are solely on the basis of a patient report about the status of their health without amendment or interpretation by a clinician or others. Patient-reported outcome assessments provide an opportunity to incorporate the patient perspective into clinical care, research, and clinical trials. Our paper provides an overview of terminology and development methods for patient-reported outcomes and reviews (1) currently available patient-reported outcome instruments appropriate for use in glomerular disease, (2) existing patient-reported outcome data in glomerular disease, and (3) opportunities for incorporating patient-reported outcome instruments into clinical care and research.
Copyright © 2016 by the American Society of Nephrology.

Entities:  

Keywords:  Disease Management; Humans; Patient Outcome Assessment; glomerulonephritis; glomerulopathy; kidney disease; patient-centered outcomes; quality of life

Mesh:

Year:  2016        PMID: 27259977      PMCID: PMC5220669          DOI: 10.2215/CJN.13231215

Source DB:  PubMed          Journal:  Clin J Am Soc Nephrol        ISSN: 1555-9041            Impact factor:   8.237


  40 in total

1.  Assessment of health-related quality of life as an outcome measure in granulomatosis with polyangiitis (Wegener's).

Authors:  Gunnar Tomasson; Maarten Boers; Michael Walsh; Michael LaValley; David Cuthbertson; Simon Carette; John C Davis; Gary S Hoffman; Nader A Khalidi; Carol A Langford; Carol A McAlear; W Joseph McCune; Paul A Monach; Philip Seo; Ulrich Specks; Robert Spiera; E William St Clair; John H Stone; Steven R Ytterberg; Peter A Merkel
Journal:  Arthritis Care Res (Hoboken)       Date:  2012-02       Impact factor: 4.794

Review 2.  Recommended methods for determining responsiveness and minimally important differences for patient-reported outcomes.

Authors:  Dennis Revicki; Ron D Hays; David Cella; Jeff Sloan
Journal:  J Clin Epidemiol       Date:  2007-08-03       Impact factor: 6.437

3.  The OMERACT core set of outcome measures for use in clinical trials of ANCA-associated vasculitis.

Authors:  Peter A Merkel; Sibel Z Aydin; Maarten Boers; Haner Direskeneli; Karen Herlyn; Philip Seo; Ravi Suppiah; Gunnar Tomasson; Raashid A Luqmani
Journal:  J Rheumatol       Date:  2011-07       Impact factor: 4.666

4.  Clinical trials treating focal segmental glomerulosclerosis should measure patient quality of life.

Authors:  Debbie S Gipson; Howard Trachtman; Frederick J Kaskel; Milena K Radeva; Jennifer Gassman; Tom H Greene; Marva M Moxey-Mims; Ronald J Hogg; Sandra L Watkins; Richard N Fine; John P Middleton; V M Vehaskari; Susan L Hogan; Suzzane Vento; Patti A Flynn; Leslie M Powell; June L McMahan; Norman Siegel; Aaron L Friedman
Journal:  Kidney Int       Date:  2010-12-22       Impact factor: 10.612

5.  Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study.

Authors:  David T Selewski; Susan F Massengill; Jonathan P Troost; Larysa Wickman; Kassandra L Messer; Emily Herreshoff; Corinna Bowers; Maria E Ferris; John D Mahan; Larry A Greenbaum; Jackie MacHardy; Gaurav Kapur; Deepa H Chand; Jens Goebel; Gina Marie Barletta; Denis Geary; David B Kershaw; Cynthia G Pan; Rasheed Gbadegesin; Guillermo Hidalgo; Jerome C Lane; Jeffrey D Leiser; Peter X Song; David Thissen; Yang Liu; Heather E Gross; Darren A DeWalt; Debbie S Gipson
Journal:  Pediatr Nephrol       Date:  2014-06-09       Impact factor: 3.714

6.  Effect of elevated blood pressure on quality of life in children with chronic kidney disease.

Authors:  Cynthia Wong; Arlene Gerson; Stephen R Hooper; Matthew Matheson; Marc Lande; Juan Kupferman; Susan Furth; Bradley Warady; Joseph Flynn
Journal:  Pediatr Nephrol       Date:  2016-02-08       Impact factor: 3.714

7.  Construction of the eight-item patient-reported outcomes measurement information system pediatric physical function scales: built using item response theory.

Authors:  Esi Morgan DeWitt; Brian D Stucky; David Thissen; Debra E Irwin; Michelle Langer; James W Varni; Jin-Shei Lai; Karin B Yeatts; Darren A Dewalt
Journal:  J Clin Epidemiol       Date:  2011-02-02       Impact factor: 6.437

8.  Health-related quality of life of children with mild to moderate chronic kidney disease.

Authors:  Arlene C Gerson; Alicia Wentz; Allison G Abraham; Susan R Mendley; Stephen R Hooper; Robert W Butler; Debbie S Gipson; Marc B Lande; Shlomo Shinnar; Marva M Moxey-Mims; Bradley A Warady; Susan L Furth
Journal:  Pediatrics       Date:  2010-01-18       Impact factor: 7.124

Review 9.  Exploration, Development, and Validation of Patient-reported Outcomes in Antineutrophil Cytoplasmic Antibody-associated Vasculitis Using the OMERACT Process.

Authors:  Joanna C Robson; Nataliya Milman; Gunnar Tomasson; Jill Dawson; Peter F Cronholm; Katherine Kellom; Judy Shea; Susan Ashdown; Maarten Boers; Annelies Boonen; George C Casey; John T Farrar; Don Gebhart; Jeffrey Krischer; Georgia Lanier; Carol A McAlear; Jacqueline Peck; Antoine G Sreih; Peter S Tugwell; Raashid A Luqmani; Peter A Merkel
Journal:  J Rheumatol       Date:  2015-09-01       Impact factor: 4.666

Review 10.  Health related quality of life and the CKD patient: challenges for the nephrology community.

Authors:  Fredric O Finkelstein; Diane Wuerth; Susan H Finkelstein
Journal:  Kidney Int       Date:  2009-08-12       Impact factor: 10.612

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  13 in total

1.  Health-related quality of life in glomerular disease.

Authors:  Pietro A Canetta; Jonathan P Troost; Shannon Mahoney; Amy J Kogon; Noelle Carlozzi; Sharon M Bartosh; Yi Cai; T Keefe Davis; Hilda Fernandez; Alessia Fornoni; Rasheed A Gbadegesin; Emily Herreshoff; John D Mahan; Patrick H Nachman; David T Selewski; Christine B Sethna; Tarak Srivastava; Katherine R Tuttle; Chia-Shi Wang; Ronald J Falk; Ali G Gharavi; Brenda W Gillespie; Larry A Greenbaum; Lawrence B Holzman; Matthias Kretzler; Bruce M Robinson; William E Smoyer; Lisa M Guay-Woodford; Bryce Reeve; Debbie S Gipson
Journal:  Kidney Int       Date:  2019-02-27       Impact factor: 10.612

2.  Considerations and Challenges in Selecting Patient-Reported Outcome Measures for Clinical Trials in Nephrology.

Authors:  Angela Ju; Allison Tong
Journal:  Clin J Am Soc Nephrol       Date:  2017-08-28       Impact factor: 8.237

3.  Ask and It Shall Be Given: Patient-Centered Outcomes in Glomerular Diseases.

Authors:  Pietro A Canetta; Andrew S Bomback
Journal:  Clin J Am Soc Nephrol       Date:  2020-05-07       Impact factor: 8.237

4.  Trial Outcomes in Glomerular Diseases.

Authors:  Jonathan P Troost
Journal:  Clin J Am Soc Nephrol       Date:  2021-12-30       Impact factor: 8.237

Review 5.  Patient-centred clinical trial design.

Authors:  Allison Tong; Nicole Scholes-Robertson; Carmel Hawley; Andrea K Viecelli; Simon A Carter; Adeera Levin; Brenda R Hemmelgarn; Tess Harris; Jonathan C Craig
Journal:  Nat Rev Nephrol       Date:  2022-06-06       Impact factor: 42.439

6.  CureGN Study Rationale, Design, and Methods: Establishing a Large Prospective Observational Study of Glomerular Disease.

Authors:  Laura H Mariani; Andrew S Bomback; Pietro A Canetta; Michael F Flessner; Margaret Helmuth; Michelle A Hladunewich; Jonathan J Hogan; Krzysztof Kiryluk; Patrick H Nachman; Cynthia C Nast; Michelle N Rheault; Dana V Rizk; Howard Trachtman; Scott E Wenderfer; Corinna Bowers; Peg Hill-Callahan; Maddalena Marasa; Caroline J Poulton; Adelaide Revell; Suzanne Vento; Laura Barisoni; Dan Cattran; Vivette D'Agati; J Charles Jennette; Jon B Klein; Louis-Philippe Laurin; Katherine Twombley; Ronald J Falk; Ali G Gharavi; Brenda W Gillespie; Debbie S Gipson; Larry A Greenbaum; Lawrence B Holzman; Matthias Kretzler; Bruce Robinson; William E Smoyer; Lisa M Guay-Woodford
Journal:  Am J Kidney Dis       Date:  2018-11-09       Impact factor: 11.072

7.  Qualitative evaluation of a community health representative program on patient experiences in Navajo Nation.

Authors:  Amber Lalla; Shine Salt; Elizabeth Schrier; Christian Brown; Cameron Curley; Olivia Muskett; Mae-Gilene Begay; Lenora Shirley; Clarina Clark; Judy Singer; Sonya Shin; Adrianne Katrina Nelson
Journal:  BMC Health Serv Res       Date:  2020-01-08       Impact factor: 2.655

8.  The longitudinal relationship between patient-reported outcomes and clinical characteristics among patients with focal segmental glomerulosclerosis in the Nephrotic Syndrome Study Network.

Authors:  Jonathan P Troost; Anne Waldo; Noelle E Carlozzi; Shannon Murphy; Frank Modersitzki; Howard Trachtman; Patrick H Nachman; Kimberly J Reidy; David T Selewski; Emily G Herreshoff; Tarak Srivastava; Keisha L Gibson; Vimal K Derebail; Jen Jar Lin; Sangeeta Hingorani; Alessia Fornoni; Fernando C Fervenza; Kamalanathan Sambandam; Ambarish M Athavale; Jeffrey B Kopp; Heather N Reich; Sharon G Adler; Larry A Greenbaum; Katherine M Dell; Gerald Appel; Chia-Shi Wang; John Sedor; Frederick J Kaskel; Richard A Lafayette; Meredith A Atkinson; John C Lieske; Christine B Sethna; Matthias Kretzler; Michelle A Hladunewich; Kevin V Lemley; Elizabeth Brown; Kevin E Meyers; Crystal A Gadegbeku; Lawrence B Holzman; Jonathan Ashley Jefferson; Katherine R Tuttle; Pamela Singer; Marie C Hogan; Daniel C Cattran; Laura Barisoni; Debbie S Gipson
Journal:  Clin Kidney J       Date:  2019-08-05

9.  NephCure Accelerating Cures Institute: A Multidisciplinary Consortium to Improve Care for Nephrotic Syndrome.

Authors:  Debbie S Gipson; David T Selewski; Susan F Massengill; Mary Margaret Modes; Hailey Desmond; Lauren Lee; Elaine Kamil; Matthew R Elliott; Sharon G Adler; Gia Oh; Richard A Lafayette; Patrick E Gipson; Aditi Sinha; Arvind Bagga; Anne Pesenson; Cheryl Courtlandt; Cathie Spino; Richard Eikstadt; Renée Pitter; Samara Attalla; Anne Waldo; Richard Winneker; Noelle E Carlozzi; Jonathan P Troost; Irving Smokler; Mark Stone
Journal:  Kidney Int Rep       Date:  2017-11-28

10.  Longitudinal Changes in Health-Related Quality of Life in Primary Glomerular Disease: Results From the CureGN Study.

Authors:  Shannon L Murphy; John D Mahan; Jonathan P Troost; Tarak Srivastava; Amy J Kogon; Yi Cai; T Keefe Davis; Hilda Fernandez; Alessia Fornoni; Rasheed A Gbadegesin; Emily Herreshoff; Pietro A Canetta; Patrick H Nachman; Bryce B Reeve; David T Selewski; Christine B Sethna; Chia-Shi Wang; Sharon M Bartosh; Debbie S Gipson; Katherine R Tuttle
Journal:  Kidney Int Rep       Date:  2020-07-23
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